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Monthly Archives: January 2018

Last week, it was decided that, for a while, my day actvities hours will be cut. It was also suggested that my current day activities center, which caters primarily to people with intellectual disabilities, may not be the best fit for me. I’m not intellectually disabled, after all. I’m autistic, but if you’re of at least average intelligence, somehow that doesn’t count as a developmental disability.

I had to accept this, to surrender to the decision made for me. But I decided not to give up. I am okay with this being a temporary thing, but I don’t want to be shoved around like a cart. I’m a person, after all. I know I don’t fit neatly into one dsablity label box. I am both blind and autistic and have mental health issues.

Over the past week I alternated between fight and surrender. When surrendering, I was depressed and didn’t feel like there’d ever be a place for me. I even pushed my husband away, because I wasn’t sure I could choose between him and proper care. Now I know this is a false dilemma.

When in fight mode, I felt energized. I’ve been making phone calls, thinking up next steps. I have an appointment with my community psychiatric nurse on Monday to discuss how to proceed.

It doesn’t help this wasn’t the first time I fell between the cracks care-wise, but in a way, it does. I know how to navigate the system, after all, and I know not to surrender to a poor quality of life.

And again I really didn’t get to write as much as I’d like to have done. The past week was quite busy. I had my first session of movement therapy on Tuesday and a meeting with my nurse on Thursday. Actually, I would’ve had a session with my CPN, but she’s off sick. I was so grateful that my nurse asked whether I wanted an appointment with her instead, as I really needed to talk.

I’ve not been doing well lately. I’m very irritable and easily overloaded. I switch a lot between being completely in my “rational mind” and feeling terribly emotional. I try to use my DBT skills, of course. Not that I’ve come far on the formal DBT course I do with my CPN, but I’ve been doing it by myself. I do an okay job when I’m not overwhelmed, but once overwhelmed, all my skills go out the window.

I mostly find that I can’t handle this huge, gaping split between my (verbal) IQ and my emotional, practical and behavioral functioning. At day activities, this is becoming more and more problematic. The staff are telling me that my irritability upsets the other clients, who are “like a baby” and can’t understand. I tell them that I don’t understand stuff myself, either, but because I’m not intellectually disabled, I should somehow be able to be more capable.

Because I’m too much of a handful, my day activities are being reduced. I won’t get additional home support in exchange. This upsets me greatly. It feels as though, when I need more help the most, I’m punished for it by getting less. Again, the main reason is my IQ, because other people with significant behavioral challenges at my day activities, get more care.

“We don’t do psychiatry.” That’s my day activities staff’s reasoning for cutting my hours when I’m too irritable. The other staff even mentioned finding me another place to go. I don’t know where. I mean, day activities for mentally ill people cater mostly to those with psychotic disorders. I have experience with that and I run into the same crap I get here there. After all, people with schizophrenia can’t help reacting to their voices either.

For clarity’s sake, I’m not saying that people with severe intellectual disabilities or those with actively psychotic schizophrenia should just be able to hold it togehter. I know they can’t, but I can’t always hold it together either.

I know my staff try their best. The staff who decided to cut my day activities hours, got angry when I told her they’re expecting too much out of me. I know she’s never worked with a person of at least average intelligence who still has signiificant sensory issues and challenging behavior. I know the manager probably told her to prioritize her main focus group, ie. those with severe intellectual disabilities. It’s interesting that she refers to the other clients as “the clients”, not “the other clients”, when she talks to me.

However, I can’t keep from being reminded of all the great lengths to which the staff go to accommodate their other clients with challenging behavior. For one person, a staff goes to his group home to provide him day activities one-on-one. Two at my group get several hours of one-on-one too. I don’t ask for that, but I don’t ask for the other extreme, ie. being cut off my hours, either.

It’s already the second week of 2018 and I haven’t written about my goals or hopes or dreams for the year yet. Last year was a productive year, mostly because I finally moved out of the mental institution after 9 1/2 years. From there on, I’ve been attempting to move forward and live a healthier life in many different respects. Physically, I embarked on a weight loss, healthier eating and fitness journey. I was also referred to an occupational therapist for help with my mobility and fine motor impairments. For my mental health, I started dialectical behavior therapy.

I also started day activities once out of the institution. This is a huge accomplishment, as I could never handle the pressure of going to a day center for any prolonged amount of time. At first, I went to an industrial group, but I was later moved to a sensory-based group. This has been a very positive experience. I also started horseback riding in September and swimming with my husband in November. Lastly, I got an iPhone. All in all, I did a pretty godo job of ticking off the items of my 2017 bucket list.

It doesn’t mean I don’t still struggle. In 2017, I took two overdoses which required a night on the internal medicine ward. As I mentioned last Sunday, on Wednesday, I engaged in pretty bad self-injurious behavior at day activities. I’m still often very much stressed out.

On Writes Like a Girl, Nicole shared an interesting take on the cycle of life: she theorized that one year is for action and the next for maintenance. Her 2017, like mine, was totally about moving forward. She deliberately chooses 2018 to be a year for rest and calm. She will continue to move forward, but at a slower pace than she did in 2017. Same for me.

My word for 2018 is a word that fits in nicely with dialectical behavior therapy. The first skill we work on in DBT is mindfulness. Mindfulness is pretty much hyped up and I’m not too sure I fully understand it. Even so, I think it’s an important skill. Like Nicole, I need to do less and be more. My word for 2018, for this reason, is simply (or not so simply): be.

This doesn’t mean I don’t have goals for 2018. For example, I do still want to continue my healthy living and weight loss journey and set myself a new goal weight for the end of the year. However, I’m taking this slowly. After all, I’d rather lose the weight slowly and keep it off than lose it rapidly only to gain it all back.

Other than this, I don’t have any goals that require me to reach a certain end result. I mean, I’ve set myself a goal of keeping a jornal, but I’ve not set a requirement of how often or how much I need to write. I also really hope to blog more this year and I think I’m finally ready to ditch my mediocre Dutch blog and move my focus entirely back here.

Oh my Gosh, it’s beginning to get boring: I haven’t written on this blog in almost a month. I want so badly to write more in 2018, but instead of wrting on this blog, I’m writing brief entries in my journal on my phone. I love it, don’t get me wrong, but I love my blog too.

It has been on my mind for a while to start writing in diary style on my blog. Of course, I can’t share everything I can in my private journal here, but I can share some things. I love the personal mental health bloggers who share what it’s like living with mental illness on a day-to-day basis. So for this purpose, I’ve created the “Diary” category on my blog. Feel free to skip these entries if you’re not interested in them, but if you are, I’d love to hear your thoughts. Today, I’m sharing about the first week of 2018, obviously.

The year didn’t start out that well. I was a bit overloaded and stressed out. I was perseverating on finding a good journaling app for my phone, because I badly wanted to start journaling privately again in 2018. I’ve tried a few apps on the computer and a dozen websites, but I can’t find any that work. By 12AM Monday, I said a quick “Happy new year” to my husband and sister-in-law, who was celebrating with us, only to return to my phone again. In the end, I found a great app: Dyrii. Still, judging by how easily I write this post versus my journal entries, I’m finding using Notepad on my computer is still easier than my iPhone.

I had been going to day activities as normal between Christmas and New year’s, so I only had Monday off, but it felt rather strange to return on Tuesday. I had been informed before the holidays that we’d be getting three new clients in my group at day activities in January. For those who don’t know, I go to a sensory-based group for people with severe intellectual and multiple disabilities. All clients except for me need help with their personal care. The reason this group still fits me is that I’m very easily overloaded and prefer the sensory way of learning. We currently have one group of six clients, including me, in the main room and two clients who are very easily overstimulated in the adjacent room. Come January, I and two of the other current clients would move into the adjacent room with these two clients who are already there. As it turned out, that hasn’t happened yet, because the new clients aren’t there yet.

The total group size will grow from eight to eleven. We won’t get extra staff. This was a stressor to me, as was all the talk about the one-on-one for two clients that needs to be well-arranged in order to make this work, as well as the talk about a client needing one-on-one for meals. It was suggested there’d be no more activities but just meals and personal care moments. This suggestion was made on Wednesday, when I was already pretty badly overloaded and stressed out. I tried to calm myself by thinking I could use my computer or phone if I wanted to do something but there’d be no support available. So I retreated into the adjacent room to use my phone, only to be overwhelmed by people yelling in the corridor. This sent me into full-blown meltdown. I mean, if I can’t use the adjacent room without being overwhelmd now, how will I do so once my two fellow clients join me? I know these are the quietest clients, but still.

Looking back, I am lucky that my staff didn’t see the entire event. I banged my head against a wall, which my husband later asked about whether it got me suspended from day activities. I only then realized that it could have. The only part my staff witnessed was me trying to run away and being pretty irritable. My staff took me to the snoezelen (sensory) room and I had to stay there for fifteen miutes. Then she returned and we talked stuff through.

I called my mental health team, which is a kind of team that always has a community psychiatric nurse on call during office hours, as soon as I got home. The on-call CPN advised me to always have a PRN Ativan with me. I used to always have one with me until my last overdose, when my husband took them away. I haven’t needed it since. The on-call CPN also advised me to call the out-of-hours phone number I’d been given last week whenever I need it. I had been hesitant to call them during the new year’s week-end, as I reasoned my husband was home so I should be able to work out things with him. I haven’t needed to call them since speaking to that CPN though. In fact, I’m pretty calm now. Maybe I needed to melt down in order to calm down again.